This topic contains 167 replies, has 24 voices, and was last updated by 
tom 11 years, 6 months ago.
Hi Dai
Thanks for your good wishes. Hope those gcsfs are starting to work. I thought of you when we were at the hospital last Monday……one in the hope your virus was sorted, and secondly when they told us they would not fund those prelixfor? Injections….Colin had to have the toxic cyclo prime!. This was our first experience of postcode lottery!
Hope you are feeling in better form 🙂
Vicki and Colin
Hi Vicki and Colin
Just checking in to see how you are both doing? Hope you are having a restful weekend.
Love Ali xx
Hi Ali
Hope your mum is still on the onwards and upwards ladder!
We've had a good weekend thanks, but I've found lots of jobs to do to keep me busy. Colin has felt like he has the flu and some aches and pains today …..:-), could this be stem cells!
Bit nervous tonight as we are off to Bristol in the morning for a second go…..fingers crossed. Will keep you posted.
Thanks for thinking of us
Vicki and Colin xx 🙂
Hi
Fingers and toes crossed for tomorrow for you. Will be thinking of you.
Im going with Mum to have her hickman line out tomorrow – she will feel a bit more like herself without her tassles!.
Will check in tomorrow night to see whats occured 🙂
Love Ali xx
Hi Ali and all,
Day 1, FAILED. absolutely gutted. Score was only 1. Worse than last time, it started at 5 then. The chances of it working tomorrow would think is less than a snowball surviving in hell……and this is hell.
No hope for tomorrow and we don't have a plan c and the stem cell nurse is on holiday for a fortnight and no one to talk to. Sorry this post is glum, we feel it. Hard to say it will be alright when I don't have a clue
Vicki and Colin. 🙁 🙁
Hi Vicki
I have not replied to your posts as we are not at your and Colin's stage yet and dont know that much about STC but I have been following posts very closely. I was devastated to hear that it failed. Vickie can Colin's consultant be able to tell you what plan c can be. you must be so worried and hopefully someone else will be able to help with advice. My thoughts are with you both
Love Jean x
Hi Jean
Thanks so much. I hope your husbands treatment is going well (Frank isn't it?). I have also been following your posts too. We are expecting a complete failure tomorrow and so phoned to get an appointment with the consultant on Thursday this week so that we can get a good understanding of where we go from here. We were so fed up,we,decided to go out for a meal this evening, so at least we felt like we were enjoying ourselves! We weren't out long but it was a change.
It's just so destroying when you drive all that way for a huge disappointment, that to me feels like a stake in my heart. And I can't hide it..Colin says that upsets him more because he can't bare the look on my face. Still there must be a plan c. I can't understand why colins cells are so stubborn. By the way we emailed Ellen the nurse on this site. We were really impressed with the speed and detail of response. If you need to use her knowledge, do. We found that so helpful and comforting.
Take care both
Vicki and Colin 🙂
Hi Vicki
Are they trying again tomorrow? Oh I really hope that it works this time. It really makes me sick with this post code lottery. If someone needs medication it should not make a difference where the h*ll they live. I am like you Vickie I worry if I'm not worried. I questioned the SCT co ordinator if the Belfast trust funded prelixfor. She told me that so far they had funded 6. She did not expand but I got the impression the funding had to be applied for. Something else for me to worry about. You are right about Ellen, I torture the poor women, she must have the patience of a saint. And as you say she is so quick,in getting back – I thinks she realises how uptight we all are.
Glad you and Colin got out for a little bit tonight and you will both be in my thoughts and prayers tonight that tomorrow will bring you a much better result. Think it will be the first time I will ask for someone to have pain 😀
Love Jean
Hi Vicki and Colin
Oh no, I dont know what to say to you both. Im so sorry you have got this added worry.
So, let me get this right. You have got to go back and try again tomorrow?.
I am gutted for you. Glad you got some good info from Ellen. There has got to be a plan c.
Love Ali xx
Hi Vicki
This is a terrible blow for you both, i can't imagine how i'd have felt if that had been me. It is to be hoped that Plerixafor is now going to be allowed for Colin. Keep us posted about plan C.
Love Helen
Hi Vicki & Colin.
I'm so sorry to read your post. It must be heartbreaking. Hopefully tomorrow will bring a big change. I know what a big blow being told something isn't working is. I hope they allow you to use plerixafor to boost Colin's cell production. I've not been down the sct road but I'm sure there must be another plan. To get so close and to be denied by money constraints is not only cruel but criminal in my eyes.
Got my fingers crossed for you both.
All the best
Andy x
Jean,Ali,Helen,Andy
Thanks for your support. I felt quite emotional and supported when I read them. Colin will read them too. He was almost tempted to post himself and thats a first.
Andy, I feel bad moaning because you seem to have had such a struggle to get your pps down and here you are taking the time to support us. I so hope your pps come down to an acceptable level so that you can have an SCT :-).
Helen, Ali, Jean, it is a blow, we are going down again today but we don't have hope. Colin has had very little pain, which at first we put down to the v strong painkillers he is on for his back anyway. Infect we think it's just not working. Although the doctor said it can go from 1 to 17 overnight, the way colins seems to move is slow. It does seems that funding is an issue here, and we hope that we can be allowed to apply again and won't just give up on the SCT idea. Ellen the nurse said that they would help put a business case together for us/the hospital. The one thing I don't understand is that in the sct book it says that with cyclophosmahide priming they usually give 10 days gcsf injections (we have 6 days). Also no one has mentioned double doses etc. Sometimes the effort to get these cells out seems to be lacking, or maybe that's just me being fed up.
Where we go from here I don't know, but if we could have some minor miracle today that would be great. What worries me is that Colin is getting more disheartened and I am running out of things to say:-(. He has such a good response to treatment and we feel like we are banging our heads against a brick wall. THERE HAS GOT TO BE A PLAN C!
sorry for rambling…..will keep you posted. I hope these booster injections become the norm so that others don't have to go through this
Viicki and Colin x
HI vicki & Colin,
I was told that there can be a big jump from one day to the next, although 1 compared to 5 last time shows that Colin will need it. Did they send you home with a GCSF injection or double dose? If not, why not? Were they adamant that Plerixafor was definitely not an option at any stage? Mondays are normally hectic with big clinic etc., but I am surprised that you didn't get a visit from a consultant to discuss what happens next (i.e. from day to day). Did you see any doctor at all?
I would have thought a double dose of GCSF would have been the least they could have done for you. I too had a very slow first day and they sent me home with a double dose of GCSF… it didn't have a great effect so Tuesday night we had to come back in at 11pm for a Plerixafor injection. Wednesday was slightly better but the Prof didn't want to take any chances so after the Thursday reading we were called back in again for another Plerixafor injection and Friday produced enough (just enough) to give us a total of 2.1m,
If things look slow today I would request a visit from a consultant to discuss options before the week gets away from you… don't get upset or angry, get assertive, its your treatment… and you should have some say in the process and outcome.
I will be thinking of you today… best wishes
Dai.
Hi Dai/all,
Just got back from the hospital. His numbers had not budged from yesterday. We saw a young doctor who told us the scores this morning and was very sorry for us. He did not however want to preempt what our consultant might say. When we came home yesterday we thought this would happen today so contacted the hospital to get an appointment with the consultant this Thursday, as you say Dai, to avoid the weeks getting away from us. I know they are busy people but both times we have had no contact from the hospital and it has always been us that has instigated that contact…..which is a bit disappointing.
The young doctor we saw today again mentioned the plerixafor and we told him the funding situation. They all mention it. We contacted Ellen yesterday on this site, and she said they help to create a business case and that's my next step. Still no one has mentioned double dose gcsf injections, in fact they gave him less gcsf strength this time, along with the cyclophosphamide. Gcsf on it's own was more effective last time. You are right about getting assertive. I also read that they normally give 10 days gcsf with cyclophosphamide but we did not have that either. I know we will be more assertive Thursday because we have entirely played it their way up to now but this is causing us both stress that we don't need.
Keep your fingers crossed for us.
I hope your bug has settled down now Dai. 🙂
Vicki and Colin
Hi Vickie
Sorry to hear that things are no better. I know it can be difficult with some consultants, they seem to be "the all powerful" but they are human. So as you say be assertive Vickie, have a written list of questions so there is nothing left out. When we visit consultant I take a little recorder to record the consult, as I have the worse memory in the world.
Will be thinking of you both on Thirsday and hope you get something positive out of it. Everything will be crossed
Best wishes
Jean x
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